Victims of the NHS contaminated blood scandal have called on the government to introduce mass screening for hepatitis C infections to prevent more deaths.
In the run-up to the public inquiry into the medical disaster that has killed thousands of people, lawyers and patients’ groups are pressing the health service for public awareness programmes and testing of those given blood products or transfusions during the 1970s, 80s and 90s.
The infected blood inquiry will begin hearing individuals’ testimonies in London on Tuesday before hearing witnesses in Belfast, Leeds, Edinburgh and Cardiff over the coming months. The inquiry is expected to take up to three years.
It will investigate why so many patients, many with haemophilia who needed regular treatment, were given blood plasma from the US contaminated with HIV, hepatitis C and other viruses. Many of the products derived from blood donated by prisoners and drug addicts who were paid.
More than 25,000 people may have been infected, Sir Brian Langstaff, a former high court judge and chair of the inquiry, told a preliminary hearing last autumn. Medical records have gone missing and government documents destroyed, raising questions about whether there were attempts to evade responsibility.
Nearly 3,000 people have died as a result of the contamination, and patient support groups estimate victims are still dying at the rate of one every four days. Half of those with haemophilia who were infected have now died.
Young women were unknowingly infected by their husbands. Women needing transfusions after childbirth and patients who needed blood after surgery also picked up lethal viruses. In one case a boy who went to the dentist and ended up needing a blood transfusion was infected.
The inquiry will start at Fleetbank House, off Fleet Street in central London. Hearings will run from Tuesday to Friday every week and will be broadcast live online. There is expected to be about 2,500 witness statements, with health department staff, NHS officials and politicians likely to be questioned in the later stages.
The two main groups of victims are haemophilia patients who were given plasma or factor 8 products derived from many donors, and other patients who were given transfusions normally from a single donor. About 90% of haemophiliacs were infected; the infection for those receiving transfusions was closer to 1%.
The hepatitis C virus, or HCV as it is also known, was not formally identified until 1989 by scientists in California. Before then it was called non-A, non B viral hepatitis. The damage it inflicts on the liver does not usually show in the initial stages of infection.
Clive Smith, the chair of trustees at the Haemophilia Society, said: “There was no test for hepatitis C until 1991, and there were often no symptoms until the liver began to fail, so many people were not aware they were infected.
“The only recommendation from the Penrose report was for a ‘look back’ screening programme for anyone believed to be at risk of infection from that period, but it was not followed up. There’s never really been a justification for not doing it.
“It’s not unusual for our members to tell us that they were tested for HIV without their knowledge, without their consent and were not informed of the results. This scandal has torn apart thousands of lives. We hope the inquiry will finally expose the truth about why this happened and hold those responsible to account.”
Gene Matthews, a partner at the law firm Leigh Day, which represents about 300 victims, said: “It is estimated many thousands of people remain unaware of the fact that they are suffering as a result of HCV which they received as a result of contaminated blood provided in the 1970s, 1980s and early 1990s. There are also families who lost loved ones from the virus after they became infected during this period of time.
“We have people coming to us who have ben diagnosed very recently. We urge the Department of Health to help people identify whether they have the virus, especially as new treatments, which have become more widely available during the past few years, are very effective and have a 90% success rate in clearing the virus from the body.”
Des Collins of Collins Solicitors, which represents more than 1,000 victims, said look back testing was not seen as the primary focus of the inquiry, but it was important.
“It hasn’t been done and it should have been done,” he said. “This is the worst UK peace-time tragedy. The nightmare continues for so many people whether infected by hepatitis C and/or HIV/Aids – as well as for the friends, families and loved ones of the many hundreds of people who have died.
“[People need answers about] how and why they received infected treatments produced by the Department of Health and commercial pharmaceutical companies, the details of the extensive cover-up that followed, and – very importantly – what the government proposes to do about it.”
The Department of Health and Social Care declined to explain why it has not carried out look back tests. A spokesperson said: “The infected blood scandal was a tragedy that should never have happened, and the ongoing public inquiry was set up to get to the truth and give families the answers they deserve. We are following the inquiry closely and will continue to cooperate fully.”